Chronic pain Cafe - support thread #3 All Welcome

[Akire]

New shiny thread to get us through December & Xmas and possible New Year!

This thread is for anyone who has days , weeks, months at time when get chronic pain flair or lives in pain constantly. There are so many conditions that have pain and often limited understand of how it feels to be living with it. Everyone is very welcome

Hi @OneNightTimeMenaceStrikesBack I'm still awake too.

@Akire thanks for the welcome, hope you got the wrapping done without stuffing too much for it. .

@lolaflores it's so hard isn't it, trying to live up to other people's expectations. I get it about wanting to be left alone. I'm pretty angry about everything too. Hugs and I hope you find a way to get through the next days.

@bicyclesaredeathtraps sorry you have Covid as well!

Feeling a bit better this evening - and only one dose of rescue meds today. Managed to clear junk off dining and coffee tables, wrap presents, wash my hair and make brandy butter. Still moving slowly but I couldn't have managed any of that yesterday. I've pushed myself quite a lot in the last few weeks and that's probably why I'm having a bad patch.

Oops Akire without suffering too much

Good morning. Merry Christmas everyone.

@bicyclesaredeathtraps

Sorry I've been awol, covid has been making me fairly poorly. Very wheezy (sats a bit low today but not below 90 so I'm keeping an eye on it) and sore and achey more than usual. Also been being really sick which is not fun for Christmas. I'm isolating alone but haven't lost my taste so I was looking forward to eating chocolate for breakfast and antisocial food like garlic bread and hummus

Sending best wishes covid and Xmas in your own not a great combo x

Thanks @Akire hope you're doing well and everyone has enjoyed/ survived Christmas Day.
I've had a lovely day despite covid. Zoom church in the morning, videocalls with family and friends, Christmas films, and so on. Even managed to eat most of the treats I'd planned.
Spent an hour feeling really ill and vomiting mid-afternoon, which was less fun. Also had a scare with oxygen levels dropping for a while, but with rest and trying to breathe as deeply as possible they went back up, so I'll keep an eye on them. Breathlessness is a horrible feeling. Still, enjoying myself from my bed has distracted me from the usual pain, so that's something! And I got some lovely fluffy slipper socks which are keeping my toes cosy and preventing cold-induced nerve pain.

Hoping that everyone has managed to enjoy some of the day and wishing everyone a peaceful night’s sleep.

Sending coffee meds and more meds for everyone to get through the day.

The oxygen is a worry isn’t it. Mine would drop 89 then bounce back up 94 in about 30 seconds. But I was checking it every hour and you worry what it’s doing rest of the time. But never started low long enough for treatment.

How’s is everyone doing?

Much better today, my sats are normal even with activity, and I don't feel sick! How are you doing?

I’m really pleased for you, onwards and upwards. Lot pain here plus lots water retention as at home feet are up most of the time. But here the swell up, so feels like reality check as at home I don’t feel is a problem but my day to day not normal. It’s fine if sleep legs up but going loo every hour at night!

Just popped on to say... I bloody love my children. They can be amazing. even though they frustrate the hell out of me sometimes!!

DH went back to work on Boxing Day and is working every day. These little (well actually not so little) angels have been so kind and caring.

Ever since "this" happened I haven't been able to bath or shower alone. DH has been working so much that I don't even want to tell you how long it's been Seinfeld I had a bath. Littlest DD carried my zimmer upstairs, ran me a bubble bath, surrounded it with candles, added bath petals and put towels on the rail so they were nice and warm. Biggest DD stayed in the next room in case I needed help and kept saying she wouldn't be perturbed by "naked mum" if I needed her. They got all my favourite body was, shampoo and conditioner out.

They are now together working on a leftover Turkey dinner - Turkey in gravy, yorkshires, mash and veg.

Literally no idea what I did to deserve these two.

Hope everyone is having a good bank holiday! Another one tomorrow whoop!!

That’s amazing it’s good for kids to help where they can makes them
More independent and aware of needs of others. I’m busy with family and 4 under 10s it’s variations on loud and chaos !

Wotcha all - have only just found this thread - I have cervical myelopathy- I have had the discectomy to reduce the pressure on the spinal cord - but have been left with pain In both hands and a limp. Tried gabapentin, amitriptyline and pregabalin - nothing touches the pain in the hands
Since all this I have had two serious falls leading a fracture dislocation of the shoulder and most recently a broken wrist (cast comes off in a couple of days)
Best I've found so far is cbd oil combining with a cbd balm on the affected areas .... tho I do try to only reach for either when it's really bad....

Hi @SpamandSparkle welcome aboard!

My hands are murder right now. AND as someone commented, nothing seems to deal with it effectively.
I havent had a drink for 11 years Nd bot smoked for 5 ut tonight they feel like the best solution
I wont...cos I'm full of drugs and I know the hangover would negate temporary relief but I am tempted.
Got through xmas but could barely walk boxing day and couldnt get the top off my DDGs bottle so felt fairly shit.
I know I cant even walk down to the high street for a change of scwnery6. This time of night I start to imagine the worst. Vodkabwontbhelp that either.

Sorry you had rough night @lolaflores things always play on mind more in middle of the night. I know what you mean about alcohol it is a handy “something” when pain relief doesn’t help. I know I’m guilty of that but sometimes somethings got to give.

When is your next test or appointment? I think you said don’t have a full diagnoses yet?

@lolaflores

Could people give me their experiences of pain management teams? Is there usually a long wait time? What to expect? How effective they have been?

Hi, @lolaflores. I was finally referred in March 2020 (can you tell what's coming?) to Muscular-Skeletal physio (not community physio) who are resposnsible for the chronic pain service in my area.

A very lovely senior physio rand me in April 2020 to say that the service was now closed - all M-S physio, the chronic pain service, the lot - until further notice.

After much stress and strain involving an incredibly difficult series of interactions with my GP practice, I finally got some other referrals to community physio and hospital consultants. I was in such a bad way by then (July 2020) I was put straight on to the regime for biologic injections (Adalimumab), given other steroidal and painkilling meds too, and told to 'shield'.

Community physio in the meantime were great - two physios visited me at home for 6 hour-long visits and set me up a programme of gentle movements and that relax my muscles around the joint and strengthen them safely. The idea is to not become too dependant on painkillers. I've been able to drop the steroids, and reduce the codeine.

(I have psoriatic arthritis, psoriasis, gut problems and osteoarthritis, yay.)

Thanks so much for your responses. I fell asleep sometime after 3am which I managed to do by sing a meditation app and even that was a battle but the vodka and tonic remained untouched.
My brain is like an unbroken horse, bolting around all over the place, only at a full head on gallop.
I woke up at 6 went back to sleep till 9.00.

I have a rheumatologist appt 6th January. GP says I have the full compliment of pain relief and I get they wont budge till diagnosis so I understand the reluctance and anyway, impossible to get an appointment at the moment. I will hang tough till 6th. Try to keep moving but am ot going to over reach myself as I have been doing and getting myself in a right old state.
I need to be firmer about no meaning no. Is it the case that because people xant "see' what's wrong they push? They dont "not believe " but just assume its ot that bad?
It's so hard hanging onto a version of myself that can do things. I dont recognise this life and this person who cant do average things like walk to the high street. I dont want to be this way

Good morning. My back is agony today.

HerRoyalHappiness so sorry to hear that. How king has it been going on? Is it a case of ride it out? Does it settle?

How’s the covid going? Can’t remember who had think there is 2 on the go?

Feeling very stiff, this damp weather is not helping at all. Have three of our sons staying so there seems to be a lot of thinking about and preparing food going on. It is lovely to see them after last year when we couldn’t but one son has been here since 17th and the other two since the 23rd so it’s a long time.

I can’t really put my feet up in the evening if they are all here as I have to share “my” sofa , and I have been very tired, also on Christmas night we had high drama when a drunk driver crashed his car at 12.30 am in our normally quiet road, lost a wheel and then carried on trying to get it going, nearly hitting all our cars. We rang the police but by the time they came, arrested him and removed the car it was almost 2.30 am 😩

Wow that is drama indeed. Yes it’s hard when more people around and can’t just lay down, put feet up as normal.

i came down with flu day after boxing day. feel horrendous. Def not covid as confirmed by PCR being negative. its getting on my chest, i can feel it so id bet money on it turning into a chest infection int he next few days, have already upped my inhalers as per my rescue pack and am watching and waiting to see what to do next

Oh no that’s all you need. Least bank holidays are over tomorrow should make it tiny bit easier to get medical attention. Hope you get some sleep tonight one more day over with, and all that